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Now I am the
Patient. By Kenneth Nazinitsky, M.D.
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| Originally posted at
Aish.com |
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Being a
patient and dealing with a serious illness, changes your life. It also changes
the lives of the people around you, especially your children, family and
friends. As a physician, I took care of my patients with that significance in
mind. Now I am the patient.
I have had a rare bone marrow disorder
called Myelodysplasia for nearly 10 years. I had been fortunate to not need any
treatment aside from occasional blood testing, and for that, I am grateful. I
have felt G-d watching over me. Recently, my condition has changed. My bone
marrow is now in transformation and without treatment, my illness will likely
convert to Acute Myelogenous Leukemia (AML). This is an acute life-threatening
condition with my only hope for a cure being a bone marrow transplant. Bone
marrow, provided by a donor, will provide me with the blood stem cells I need
to replace my dysfunctional bone marrow and live a somewhat normal life.
Even though I am a physician (radiologist), I had many questions. Which
doctors do I choose? Where do I go for treatment? Will I need chemotherapy?
Radiation therapy? Blood transfusions? What is the prognosis? Can I do this? I
began to educate myself on my illness with a new appreciation for the material
than when it was taught in medical school. I knew this was a rare disorder with
new treatments.
With everything at stake, I needed to get things in my
personal life in order. The hardest part was discussing the issue with my four
children. With prayer, I found some of the answers to my questions and learned
to take on one thing at a time. We have all heard the phrase, "One day at a
time". That has never been more real to me than now. I was only in the
pre-transplant phase yet had to prepare for what was to come. The details of my
future were a mystery. My outcome, unknown.
Patients who require a bone
marrow transplant must find a donor with a matching tissue type. Since tissue
type is inherited, the best chance of finding a match is with a sibling or
other family member. Unfortunately, I was not lucky enough to have a match in
my family, so I was forced to turn to the international registry of over 11
million volunteers who are willing to donate to perfect strangers, and hope
that a match could be found there.
After a preliminary search utilizing
the National Marrow Donor
Program (NMDP) and with the help of the Bone Marrow Transplant Program at
the Cleveland Clinic, a few potential donors were identified and asked to go
for further, confirmatory testing to find out if any of them were close enough
matches and also to ensure that they were sufficiently healthy so that the
donation would not pose a risk to the donor or to me. For me, this time was
spent in preparation, mentally, spiritually and physically. I came to learn
that my best potential "perfect" match had been found. A 52 year old woman
apparently was the only one uncovered from the international database search. I
was elated that a donor had been found, and she seemed willing to proceed with
this anonymous, completely voluntary process. As fate would have it, two days
before I was to be admitted to the hospital, we learned there was a possibility
that she had a significant medical condition that would make her ineligible to
donate.
This was obviously a tremendous disappointment. I had prepared
myself, both physically and mentally for the transplant. My pre-transplant
tests were rushed to completion and everything looked good. I was supposed to
begin the preparatory chemotherapy in just a few days. More tests and weeks
passed, and we eventually learned that the donor did have a condition that
would prevent her from proceeding with the transplant. I was struck, not just
with disappointment, but with the thought that perhaps, in some way, I might
have been the one to save her life by helping to uncover a silent medical
condition.
Fortunately, in the time we were waiting for the results of
my potential donor, my health remained relatively well, aside from neutropenia
(low white blood cell count), blood transfusions, chemotherapy and other mild
medical episodes. We have now begun a new search for a donor and I remain
hopeful that a match will be found. I have truly become an advocate for bone
marrow donation, and with the help of many friends, associates and colleagues,
a local bone marrow drive was instituted on my behalf, which added over 300 new
donors to the registry. The out-pouring of support I have received has truly
been inspirational. I am still waiting, still hoping that, in the end, this
long journey will have a positive outcome.
Through this journey, I came
to learn about an important organization called the
Gift of Life Bone Marrow
Foundation (www.giftoflife.org). Gift of Life is North America's only
Jewish bone marrow donor registry. Their mission is to recruit marrow donors
from North America's Jewish communities in order to improve the chances that
matches will be found for Jewish patients like me. Since its inception, Gift of
Life has been credited with facilitating transplants and saving the lives of
over 1,500 children and adults around the world. (See information about Gift of
Life and its Founder, Jay Feinberg, below)
As an Eastern European
Ashkenazi Jew, my best chance of finding a match is to appeal to Jews around
the world to be tested and join the registry. Following the losses of the
Holocaust, which decimated the ranks of our extended families and cut off
bloodlines, Jewish patients face a particularly daunting task when searching
for a genetically matched donor. The stranger who can save my life is likely
out there, it is just a matter of getting the word out and finding him or her.
My hope in sharing my story with you, is to encourage as many Jews as possible
to register as volunteer donors.
Joining either
Gift of Life's registry
or the NMDP registry of
donors is fast and easy, requiring only a swab of cells from inside your cheek.
Interested volunteers should visit
www.giftoflife.org or
www.marrow.org to locate
scheduled donor drives in their area. If no drive is scheduled near you, you
can request a testing kit, which will be sent to your home. (There is no charge
to join the registry if you attend a drive; however, the registries often
request a donation to cover processing associated with online registration).
Donors must be between the ages of 18-60 and in general good health. All
volunteers will be added to the registry, which is accessed daily by transplant
centers around the world in search of matches for their patients. While you may
not be my life-saving match, you could save the life of another patient just
like me.
Fortunately being a blood or bone marrow donor doesn't require
much more than a little discomfort. If you are a match, the donation process is
extremely safe, and will not cost you anything. Expenses are paid by the
recipient. It doesn't cost you an organ, like a kidney or liver transplant.
Blood and bone marrow donation is different. In fact, whatever you donate,
blood or bone marrow, your body will replace it naturally within a few weeks.
What a miraculous thing the human body and the human spirit are capable of. A
donation that gives life to another human being, one to one, another living
spirit, and then replaces itself with no additional effort for the donor. For
more information about donating, please visit
Gift of Life's website,
or call 800-9MARROW.
IT WILL ONLY TAKE ONE PERSON TO SAVE MY LIFE
COULD IT BE YOU? Could it be your brother, sister or child? Please, visit Gift
of Life's website today to find out. It says in the Talmud, "He who saves one
life, it is as if he had saved the entire world." Your participation truly
means the world to me, my family, and other patients in similar need. I can
think of no greater gift to give, than to offer another a precious second
chance at life. |
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